This CW is so important it should be in neon flashing lights. This is a serious post. Serious like: mentions of 9th Circle of Hell current systemic abuse, mentions of the same kind of systemic abuse on another blog, and mentions of past suicidal feelings and coercive control. I really meant it when I said the lights were off this month, so please please be careful when reading this blog post. There is no date on this “past” post because it’s not truly a post written in the past. It’s a memory, from a time when I would never have written anything down, that has been bothering me. I think I need to write to exorcize that old ghost and thus fight my new demons more effectively. Be safe.
Did you know that the term procrastination comes almost directly from the Latin procrastinatus?
This is relevant because I have a new blog page on my main site that does not have a Latin title. This pains my Partner deeply. I think it pains my Partner almost as much as typing pains the hands of someone with Ehlers-Danlos!
My Partner pointed out recently that the saga of the 9th Circle of Hell has probably become so complex that any potential new readers will have a hard time figuring out what the heck I’m talking about on a weekly basis. (The bully-in-my-brain, of course, immediately added: “even more so than they would normally have difficulty just in understanding the ramblings of someone with ADHD with pronounced hyperactivity alone.” Thanks for that, brain.) I replied that I actually take great pains to try and link at least the most proximally explanatory blog posts, so readers can catch up if they want.
He then pointed out that that effort probably costs me more in hand cramps trying to back-link enough blog posts each time I write a new one to make my story make sense to new readers – and to those of my readers with brain fog in general – than it would to just maintain a dedicated page. Because he is sensible – and my hands really could use the rest – I followed his advice.
I created a Glossary of Terms this weekend. It should contain all the key descriptions needed to understand my rather topsy-turvy life. My Partner desperately wanted me to call it the Dramatis Personae page – because Latin is awesome – but it turns out that I write a lot more about places than people, with the possible exception of him. I claim it’s because I respect the privacy of others whenever possible. It might also just be that I am socially anxious and don’t have a lot of close in-person friendships…
Either way, I couldn’t justify the Latin page title. And, the effort to create that Glossary of Terms seems to have sapped my creativity to write another blog post this week. I’ve been procrastinating long enough that I now concede that writing a blog post telling readers to read my not-a-blog-post will probably be my only post this week! But, that confession at least does allow me to honor my own and my Partner’s creative styles and kill two birds with one Latin pun title. (I hope my Partner is pleased.)
I think my brain has struggled to write another post this week because it thinks it already has written one. It turns out there are enough “Easter Eggs” in the Glossary of terms – including how I got the pseudonym Lavender, an introduction to the not-horrible therapist whom I keep claiming I will write something about someday, a new Where’s Whoopsie, and even a link to the very first piece on mental illness that I technically ever wrote – to maybe back-justify that I even truly did kind of write an original post. (The aforementioned Easter-Egg article was written on a whim for the same reason I started my blog. It technically was posted on another blog two weeks after I started my own, but I wrote it first and submitting it probably also helped inspire this blog. But, I – in true ADHD fashion – kind of forgot that it existed at all or that at one point I was open to maybe trying to guest post on other blogs eventually. Oh, well. My life is too complicated to need anymore rejection therapy right now.)
Have a look at my Glossary of Terms and hopefully learn something new about me. I’ll write a real post next week, I promise! (Though, at least on the plus side I’ve actually managed to be more productive working from home. Not having to see my bully-of-a-boss on a daily basis at least reduces the amount of time I spend frozen in panic unable to even start a project for fear of him already despising it.)
TW: Talking potentially triggeringly about someone else talking definitively triggeringly about the Kavanaugh hearings.
I talk very loudly at times. It’s an occupational hazard of ADHD. In hindsight, I’m sure that I have said things about things that have happened in my life loudly enough into cell phones in various public places and on various forms of public transportation – possibly even this summer – such that my coastal co-commuters have formed firm impressions that the 9th Circle of Hell is not the sort of place they should put on their tourism bucket list. On a few occasions, they may even have had to awkwardly share a train home with their crying stranger.
I’m thoroughly oblivious to the volume of my voice, especially when I’m upset. To the best of my knowledge, though, those unwitting unease-droppers only learn that the 9th Circle of Hell is a terrible, horrible, no good, very bad place. They don’t know the details of why it is so horrible, both for my safety and for theirs. I don’t share any specific details of lived traumatic events over cell phones. 1) Who would I be talking to on a cell phone that I trust that much? The only person I share those things with – besides the entire Internet, of course – is my Partner. If I’m on a train, he’s probably no more than an hour away from hearing more detail than he ever wished to have seared into his brain about the most recent horrible thing inflicted by that place for the next three hours, so a tearful warning to brace himself is probably sufficient for the phone call. 2) It’s hard to be anonymous when I yell a lot. ADHD. It’s not just for interrupting. It’s for interrupting obnoxiously enough that the whole room takes notice. 3) Most importantly, I may be fairly oblivious, but I have learned what triggers are and why overly detailed accounts of trauma shared in unexpected spaces might inflict on others the kinds of PTSD episodes my boss so charmingly calls the marker of a “difficult working style.” I’m still uncertain if PTSD or some other spoon-sucking diagnosis will eventually cost me my job, but taking someone else down at the same time seems like forfeiting to the 9th Circle of Hell without so much as a fight.
Given that I am generally as oblivious and audible as they come, I find it – surprising – that I still have more subconscious self-decorum then the presumably neurotypical know-it-all I shared an evening train ride home with tonight. The guy – dressed in what I presume still qualifies as generic early 20s hipster while proudly manspreading across three seats – was boasting loudly to his cell phone partner about how sensitive he was for recognizing that sexual assault survivors might be re-traumatized by what they had heard during the hearings today, how he had taken up the mantle of explaining to his less-enlightened male friends exactly how prevalent sexual assault was, how there are many reasons why women might not come forward, and how he considers himself an ally. Good on him and all –
– except for that bit where he explained all of these things by shouting them into his cell in a train car populated enough to be carrying at least a couple of survivors, based on his own quoted statistics?! He then illustrated his point about how certain words and phrases that don’t register to men can trigger women by offering a play-by-play of the Kavanaugh hearings today in the same booming voice.
If a bully-of-a-boss screams in an office, and there is no Lavender around to hear it, can he still control her amygdalar fear response?
We’re about to find out.
I am now a 100% remote employee?!
I am not saying “B is for Bedbugs,” because supposedly things are “happening” with that. The home is hiring a new exterminator to come tomorrow and – again supposedly – is going to deal with the code violations that resulted in the scary green notice. I’m not sure how much faith I have in either of these things, but there’s not much I can actively do until I’ve given them a chance to fail all on their own.
Having learned entirely too much about what to do to keep bedbugs out even before an exterminator comes by when a complex I lived in during graduate school got them – and finding the agency rather lackadaisical about learning from my lived experience – I’ll share it with you all. Food-grade diatomaceous earth lining the walls and furniture is a great way to stop bed bugs and other nasties from getting in if the neighbors have an infestation. It’s also a cheap and surprisingly effective after-care product once the exterminator does treat. I did my research as soon as I discovered my neighbors had them, bought that, and was the only person in a ten-unit apartment that didn’t get bedbugs back in the day. I don’t think it was strictly allowed by my lease to do my own treatments, but at the time management didn’t care since it worked.
There’s no point in putting it down in my sibling’s room until the infestation is handled with entomological nukes first, but I keep hoping the agency will at least allow me to do the same after-care measures for my sibling’s room later. I’m not quite daring enough to just do them anyway as I did in grad school, because I’ve seen agencies use any technicality to boot someone, they barely wanted someone with a trauma history to begin with, and there aren’t really any other openings.
So instead B is for Blog Awards like C is for Cookie. If I have an enforced sit-on-my-hands week, I probably should get back to that “mental health sabbatical” portion of my not-FMLA. I’m hoping to do some baking. Baking too often seems incredibly overwhelming and not worth the spoons when the world is falling apart. But, I’ve always deeply enjoyed it when I can manage it. My original “balanced scorecard” included playing with inventing recipes as a thing that made me feel more like me.
Today’s other balanced scorecard questions are courtesy of Fibronacci:
On three separate occasions recently, I have found myself writing about apologies. I wrote about how my Partner always apologizes for hurting me in an argument – even when we have both said hurtful things – because he knows that wasn’t something I ever heard growing up. Then I wrote in another post how abusers never truly apologize. (Saying “I’m sorry you took it that way” doesn’t count!) Never receiving a true apology – even when I begged for anyone to understand just how badly I was hurting – is part of my personal abuse history. Heck, it’s part of my abuse present. I haven’t yet met an official from the 9th Circle of Hell who gives a damn about the hurt that has been done to my sibling and to those of us who have to deal with the guilt of not having been able to stop it. I’ve only met abusers, bullies, and officials who wanted to sweep the issue under the rug as quickly as possible.
But, there’s another side to talking about apologies that I haven’t written about until now. I haven’t written about how I was never allowed to truly apologize. I made mistakes as a kid – of course, I was a lonely, neurodiverse, traumatized kid – and I learned early on to respond to others using all my weak spots against me by trying to do the same to them before they could hurt me first. If someone had shown they’d go for my jugular, I tried to go for theirs first. (Spoiler alert: it’s actually virtually impossible to truly hurt those who are willing to do that to you, so it never did much good.) I’ve also said stupid, impulsive things just because I have ADHD, I’m hyperactive, and rejection sensitivity hurts like Hell. I’ve responded to my Partner like he was part of my past because arguing itself made me forget my present.
My current therapist would say that I didn’t really need to blame myself for the hurtful things I said to people who had a history of saying hurtful things to me, especially when there were rather large age differences and power dynamic differences. But, when I truly decided I did not want to recapitulate my own family dynamics in another generation, it felt like I had to at least try to reach out my hands. It felt like maybe the first one to show vulnerability could make the change. We were a family broken by The System, and, thus, maybe – since we hurt each other because outsiders had hurt us first – we could find our way to healing once we understood trauma dynamics.
Another spoiler alert: showing vulnerability just made going for my jugular easier. It just opened me up to another long list of all the ways I’d screwed up over the years – dating back to age 6 at least – and how all of my failings justified anything that “might” ever have happened to me. Maybe vulnerability might have worked with one family member who is no longer with us (or maybe not) – I’ll never know – but it didn’t work with one with whom I tried it.
I’ve never received a genuine apology while growing up, but I also was never given the chance to offer one, either. I wrote in a previous post about how I was upset and triggered by some things another blogger wrote about ADHD. It hit me in a lot of the “it’s okay to hurt you because you should be normal but aren’t and it’s your choice” abuse buttons. That blogger apologized. She broke the cycle. She saw that I was upset, and she cared enough to write. That really was enough for me.
I also know the legacy of my past is that – even if I try to no longer allow others to hold past mistakes for which I’ve attempted to make amends over me – I’ll hold mistakes over myself forever anyway.
I’ve written a lot about fighting internal stigma within the chronic physical, mental, or developmental illness communities, but I initially forgot to include the most important caveat when we do so:
It’s important to call out internal stigma, but it’s equally important that we forgive mistakes within a community of people for whom just communicating at all is often fraught with fear and memories of years of failed attempts. Point out mistakes, then welcome their makers back into the community with open arms immediately as soon as they make a genuine attempt to correct them. If we continue ostracizing our own internally long after they have apologized, then we risk becoming abusers in yet another way.
That’s ironic, given that the very earliest journal entry I ever wrote was about the right to be forgiven. It’s likely naive and dangerous to forgive those who hurt us intentionally – they’ll take it as permission to keep doing it – but it’s cruel not to forgive those who hurt us unintentionally. It risks making us into the voice of the bully-in-someone-else’s brain. I wrote in my earliest journal entry how I didn’t want to ever be that again. My subconscious thus thinks that I should post that earliest entry to make sure that I’m always truly keeping myself honest to advocating for calling out stigma in a way that opens arms, not closes fists, since I know too well how easy it is to wield a litany of past mistakes against yourself for years.
The Messages in a Bottle blog post below is the very first homework I ever completed in my leather-bound journal in my very first twelve-week CBT course at student mental health services. It is the earliest Messages in a Bottle I will ever post unless, by some miracle, I find something buried on Dropbox that has survived transfer across literally every external hard drive in every state in which I have ever lived.
The song is by The Animals. There are a couple of their songs that hold personal meaning for me. Maybe I’ll write about the others eventually, but, per my notes, this is the one I was listening to when I wrote this first entry that I have never actually shown anyone until now.
Update: I also posted this in the comments, but then I remembered that smarter folks than I often skip the comments. The author of the original blog post that inspired this one contacted me. She has taken it down and apologized. She also seemed like she was still beating herself up over it even after I accepted that apology, so I want to state openly that she doesn’t need to. In talking to her, I’m reminded again that being non-neurotypical so often means communicating is terrifying and awkward and hard. It definitely still is for me, especially in person. We all make mistakes. We all struggle with what we mean to say not ending up being what we actually say. Character is in how we respond to our mistakes, and she showed she had character by caring when her post so severely triggered me. If (when – I have ADHD after all!) I ever upset someone with my writing, I hope my readers will tell me so I can have the chance to apologize, too.
That is something that none of the other déjà voodoo writers I have ever contacted about internal stigma – including Dysautonomia International, who puts that kind of stuff on main public pages – have ever done. I think it was very brave of her. I’m leaving this post up because I’ve seen a lot more than just one déjà voodoo post out there, and, to date, only one person has said: “I’m sorry.” There are a lot of folks who still need to see this post.
But, the author of the post that originally inspired this one is no longer counted as one of those people in my book. I genuinely wish her the best in her blogging tenure, and I hope others will too. Being non-neurotypical is rough. We both know it. It’s important to call out internal stigma, but it’s equally important that we forgive mistakes within a community of people for whom just communicating at all is often fraught with fear and memories of years of failed attempts. Point out mistakes, then welcome their makers back into the community with open arms immediately as soon as they make a genuine attempt to correct them. If we continue ostracizing our own internally long after they have apologized, then we risk becoming abusers in yet another way. We risk becoming those emotional abusers who keep torturing people for their “mistakes” years later without ever giving them a way to move on. I’ve also been on the receiving end of that type of abuse, and I don’t wish it on anyone who cares enough reach out to me.
Do you ever experience blog post déjà voodoo? You know, where you’d think you’ve written about a topic so many times by now that you could cease having to keep writing about it? Where you’d think you could finally put a pin in it? Yet, somehow, the thing that upsets you so much just keeps creeping up, zombie-like, such that you can’t let it rest?
I owe my subconscious an apology. I mocked it a few days ago for being so far up on its soapbox that it wrote an entire novel in my dreams about the need for internal unity among those of us with chronic physical, mental or developmental disabilities. I laughed because I’d written multiple blog posts on the topic already, and shouldn’t that be enough?
I should have understood that my chronically traumatized brain is so obsessed with the topic because it knows firsthand from too many years of experience what my heart doesn’t quite know how to accept: people don’t change. People will always seek to protect themselves first by selling others out. Or, at least most will. So, I’ll probably be writing about why that doesn’t work and desperately trying to appeal to the better angels of the blogger community for the rest of my blogging days.
I read another déjà voodoo blog post just now. This time it wasn’t dysautonomia vs. anxiety or PTSD vs. “true” mental illness. In this one, the author felt that the only way to express how life-altering it is to have ASD was to compare it to how life-altering it isn’t to have ADHD. The only way to gain acceptance for one type of neurodiversity was at the expense of another. The author stated their opinion that ADHD – while technically a form of neurodiversity – barely qualified for the category because it was simply an “accessory” diagnosis that could be “practically nullified” by treatment. (Yes, those were their chosen words.)
Anyone who ever thinks that the ADHD brain can be turned off has never had to deal with one while blind for a week. The days of wearing an eye mask on doctor’s orders did help me get more sleep than normal. It’s logical to fall asleep when it’s dark all the time anyway, but that didn’t necessarily make that sleep any less, um, “active” than my waking thoughts.
I had some bizarre dreams during my enforced lack of vision. For instance, have you ever seen those megachurches along interstate highways in the Southwest or Midwest – or just in California, period! – that look like ranches and have testosterone-laden names like “GUTS Church,” “Cowboy Church,” or “VIVE Church?” They feature boxing matches, baptisms in stock tanks, and battle-ready women’s weekends? Well, my brain created one for the horses those cowboys rode in on! It was called the Whipped Church and was led by Rev. Tacky, who preached that if parishioners were obedient to the Triple Crown in this life they’d roam free – unbridled and unwhipped – in the next. It had a food court where you could literally make hay about your faith and even a bookie onsite. (The horses, too, needed to get in on the betting action to be able to afford their “suggested” church donations.) Of course, as in many megachurches, Rev. Tacky was also known to stirrup some political diatribes alongside the entertainment!
I first assumed I should be ashamed for admitting to such a rowdy dream itself, but my Partner discovered a show called BoJack Horseman on Netflix uses a similar premise – horses running Hollywood – to satirize current events. Rather than being ashamed that my brain is so far out there as to produce that dream, I should instead probably be ashamed that my dream wasn’t quite far enough out there. I managed to somehow subconsciously mind-meld with Will Arnett and Amy Sedaris without ever having so much as received a Netflix recommendation about their show. (I actually kind of wonder how Netflix hasn’t ever suggested it? What demographic profile don’t I fit? Will I have to subvert Netflix’s impression of me by watching the show just because?)
My brain also decided it needed to write a YA dystopian novel. Full-length, with eight named characters, a beginning, middle, climax and denouement. And, of course, because my life is ruled by trauma right now, it decided that YA novel needed main characters who were more realistically affected by mental illness and the impact of worldwide trauma – that’s what dystopia is, after all – than most dystopian fiction I’ve read. I’m pretty sure the dream was prompted by the fact that the first book on tape I listened to during my week of no vision was one of those progressive feminist novels (not YA at all) that was clearly very proud of itself for including characters that were neurodiverse, but whose characters hit me in the uncanny valley about their mental illness portrayal. I couldn’t figure out why the book unnerved me so much initially, but my Partner agreed with my assessment of it after listening for a bit. He’s becoming a connoisseur of the trauma experience himself, sadly.
My subconscious apparently felt the need to continue considering the problem and ultimately determined that the characters felt like DSM-V checklists of their supposed diagnoses rather than people. They displayed all of the symptoms on the diagnostic questionnaire, but with none of the messy bleed-over between diagnoses or unique expressions of those symptoms built upon their own personality that have characterized my experiences and most of what I’ve read from other bloggers. It felt like the author did a lot of research, but she had no lived experience to make her symptom portrayals convincing. My brain is still so stuck on its soapbox about how we further stigmatize ourselves within the mental illness community by claiming some diagnoses are worse than others or that a person is better off if they are “high-functioning” vs. “low-functioning” that it had to create an entire book in my brain about the impact of within-group stigma in a future world with even more inequitable and ineffective mental health care to further prove its point.
I’d roll my eyes at myself for being that preachy in my dreams – literally and satirically – but I had my first generic PTSD nightmare last night since the spate of randomness. Even an entire YA “novel” about a terrifying possible future is a refreshing change from a replay of my real past. I got to at least direct the terrible things happening to my characters instead of having to (re)live them myself as the captive actor. I’ll happily stay diligent about wearing my eye mask for an hour daily to rest my eyes – my neuro-ophthalmologist recommended it after reviewing guidelines for eye care with Ehlers-Danlos – if it will continue to bore my brain into re-deriving better comedians’ ideas or playing novel writing instead of endless nightmares. My brain has already demonstrated that it can write trauma from re-deriving my own story. Anything my brain creates that isn’t a variation on my own trauma is a treat.
That said, my answers to Mackenzie’s questions prove why, nightmares or not, I would rather trust my own brain to write my story than anyone else’s.
Today’s questions courtesy of Life with an Illness:
“Dude, you can’t fool me. I know there’s only seven of you. When I’m seeing eleven then maybe I’ll believe I’m as think as my friends drunk I am. Now bring me my black coffee and tylenol delivery stat!”
There’s an Improv game called Five Things that seems to be fairly universal. The basic gist is that you sing a little song and then ask the person next to you on the spot to come up with five (or seven, or eleven or whatever arbitrary number) of a certain category. It’s a warm-up game to get you thinking in odd ways.
It’s also a song that will lodge itself into your brain forever. If you don’t believe me, watch here. You get bonus points if you stay on beat and/or come up with wittier or more advanced versions for your answers. For instance, to start you might ask for five types of vegetables and only be able to think of “potatoes, carrots, peas, turnips, and celery.” Later on, you might get a little more inventive: “Mr. Potatohead, Veggie Tales, Carrot Top, The Jolly Green Giant and Sweet Pea.”
I do not seem to have self-care lodged in my brain in the same way. Between the double-vision fiasco, being mentally frozen in the 9th Circle of Hell and general ADHDness, I have been kind of terrible about my self-care this past month. (Don’t worry! No real alcohol or mind-altering substances were involved in my lack of self-care. Line games are just things that have also become permanently lodged my brain.)
Ehlers-Danlos is a systemic disorder. That clearly means it can affect any part of our body that either has collagen or relies on collagen. This is rather unfortunate, given that about 30% of the raw protein content in our bodies is made up of collagen. Collagen is in everything: our stomachs, our skin, our ligaments, our muscles, our blood vessels, and even in our hair. While I don’t think this quite means we can literally say our hair hurts, it does seem to mean we can literally tear our hair out over it. I somehow manage to both grow ridiculously thick hair and lose so much of it that my Partner claims he could build another me from what gets stuck in our drain catcher. Others lose as much as I do, but without the thickness to begin with. They get to deal with visible hair loss as a result.
Another place that collagen is found is in the eyes. My family’s genetically atrocious vision and need for prism in our glasses are quite likely manifestations of EDS. I learned this the hard way this week.